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    • CommentAuthorRona
    • CommentTimeMay 4th 2017
    Great advice layer up. That time of year you can hit temperatures in the 80's so you want shorts and short sleeves or as lindylou says hit snow in the mountain but I wouldn't worry about that. I would plan more for nice spring weather Basicly the temp should be very pleasant. Saying that we are having a wetter colder than normal spring.
    • CommentTimeMay 4th 2017 edited
    Lindylou is right: layers and one heavy cost or jacket, cheap light plastic raincoat with hood.
    It can get chilly in the evenings in the mountains in Jasper and hot, hot hot in Kamloops (think heat stroke). Vancouver and Seattle are more moderate (think rain).
    Have a safe and pleasant trip and let us know all about it when you get back.
    I can't answer the Canadian Rockies question, but I did want to get back to Rona about the homeowner's insurance. (Couldn't remember what thread it was on.) Rona, I am just going to sit down and read the policy word for word, and then call the company if anything is unclear.
    • CommentAuthorcassie*
    • CommentTimeMay 23rd 2017
    I have just read your edited (May 20) input Wolf, there are some good memories there to hold close.
    It must make you angry to have lost so much.
    Seriously, think about a book, how about "Hello Dickheads" for a title??
    Take care and be kind to yourself, your pusscats need you and this board would be a lesser place without your words.
    Was trying to see the ISS tonight, but there was a solid cloud cover and I couldn't see a thing. Oh well, it was kind of Zen anyway. Keeping one eye on the ground to be able to catch Bandit pooping and clean it up; and keeping one eye on the heavens. There is something profound in all that, but I'm sleepy now, and can't quite put together what it is. Goodnight, all.
    • CommentAuthormyrtle*
    • CommentTimeMay 23rd 2017
    Cassie, Where are you reading the comment by Wolf. I don't see it.
    • CommentAuthorcassie*
    • CommentTimeMay 23rd 2017
    Myrtle, it is back a page here (page 7), where he put all those blank posts. It is dated April the 12th but edited 20th May
    • CommentAuthorbhv*
    • CommentTimeMay 23rd 2017
    I just got around to catching up on this thread too. Wolf, your post about camping reminded me of growing up. We went camping as a family every summer. Mom at packing everything into our little Years later some of my brother's rich friends were soooo jealous of all the places.we.went to. All of our vacations were done with pennies and shoestrings. His friend had.been to Europe, but was jealous of our pictures of our camping trips. Really opened my eyes.
    My backyard here in CA is peaceful in the same way our favorite camping spot was. Lately I've had trouble bringing up that peaceful feeling of that spot. Wolf said something like he was remembering standing with Diane, chest deep in the lake water, holding tight because .... he knew...
    Reminded me of that.camping spot - Forest Lake in Virginia. And reminded me, much later, of hanging on tight, but not saying anything, because..... I knew.... Good Lord. I didn't want to know. But I did....
    Thank you, Wolf, for that image. I can't imagine there.being anywhere else to share such a vulnerable thought. What.other audience would even pause to get that?
    • CommentAuthorWolf
    • CommentTimeMay 24th 2017
    bhv, I agree there isn't anywhere else such a vulnerable story would connect.

    I think that might be an unusual title but I could envision 'Hello Dickheads' as a number of Monty Python tinged explanations as to what various groups in history got terribly wrong explained directly to them as though they were in the room. There is a rich goldmine of examples to choose from which would be helped no end I'm sure by any whiff of talent in that sort of thing.

    Alzheimers' footprint is on our lives for some 12 to 14 years. I'm 66 and Dianne and I were together for 46 years. Most of my life and my memories are AD gluten free. I feel no anger at losing such things as camping was because it was us growing out of that and moving on into something else. That's the imprint of personal reality. If we are willing we undergo major changes we just try and get on with it. If we are unwilling, change can be traumatic. (This doesn't apply to loved ones dying obviously).

    Speaking of realities here's the transcript of a meeting which may or may not become more apparent by being read:

    (knock. knock. meeting comes to order.)

    Wolf 1: "This is really bad."
    Wolf 2: "Genius. What do we do about it?"
    Wolf 3: "I'm scared."
    Wolf 4: "Shut up. We need to get a grip. There's a lot of work to do."
    Wolf 1: "We're in really deep doo doo now."
    Wolf 2: "Who's going to do all this work? There's only me and I'm the patient here."
    Wolf 3: "I really am scared."
    Wolf 4: "Shut up. You be the patient. I'll be the doctor."
    Wolf 1: "I don't think we're going to make it."
    Wolf 2: "Ha! This ought to be good."
    Wolf 3: "No one cares how scared I am."
    Wolf 4: "Shut up. Meeting adjourned."

    Life is what you make it some say and it may seem to be what we made it but I think it's more accurately described as time and random events no longer intersecting. It all reminds me of Jennifer Grey who had just done Ferris Bueller's Day Off and Dirty Dancing - so she promptly went out and got a nose job and became unrecognizable.

    The Shakespeare wag once wrote that there is a tide in events where if taken can lead on to greater fortune but if missed can leave you in the back waters of whatever. This is lunacy. Not taking that tide to the new world for example is a great way of avoiding starving to death in a misquito infested swamp. What testosterone junkies like Shake there miss is that non actions carry equal weight in outcomes in a reality that brings no end of random events.

    Like that story Butch Cassidy And The Sundance Kid. One day you rob a train and the next day you're in Bolivia. "You just keep thinking there Butch. That's what you're good at." And having said that they rode off into the sunset. I'm just kidding. They died in Bolivia.
    • CommentAuthorbhv*
    • CommentTimeMay 24th 2017
    OMG Wolf. I have that meeting every day!
    I don't know why but it cracked me up.when you said "they died in Bolivia". Was it Charlotte with the evil laugh the other day? Bwaaa ha ha.
    Since Mary75 said on another thread that the forum group wants to hear from the lurkers, I will just post a line or two. At 2 and 3/4 years out, I'm still in recovery, not just from the caregiving years and then the grief, but also from the heartbreak of finding that family was not there for me after all--and that in fact, I have to be careful to protect myself from my dear offspring. That was difficult to accept, and so, so hurtful...but I'm working my way past it. Life is good, and getting better all the time, but it is a process to be sure. Moving back home to NY has been happy and joyful--there's no question that this is where I belong. I'm a NY resident now--changed my license plates, voting registration, etc., etc. All my old connections just clicked back into place, and I love the area anyway, above and beyond having many friends and acquaintances here. The church choir embraced me as if I had never been gone--we have a really good choir that is very active, but I had to give it up when caregiving became too heavy. The apartment complex is fun--plenty of socialization with other dogs for Bandit, (and chatting with their owners for me), and plenty of long, woodsy walks outside around the perimeter of the complex. I'm nearly finished furnishing and decorating the apartment--that has been a creative process-- having to start from scratch because all my "stuff" is in the Heartland house in the Midwest. So I'll keep the house for a while and see whether or not I can form any real connections down there. I'll be going down for the second half of July and August--need to be back in NY by Sept. 5, when choir starts again. The house location puts me right in between DD and ex-s-i-l in more ways than one, and there is no way it is ever going to be the pleasant family gathering place I had envisioned. So I need to see whether it can be a real home place for me--just me--a place where I have friends and genuine interests and activities that I want to pursue. DH loved it there, and we had some nice times in that house before Al Z. Heimer became too horrible. DH died there, but is interred here in NY, so I feel close to him no matter where I am. We shall see. I'll keep the house one more year for sure--make a genuine effort to engage with the local area--, and see whether I get enough use out of it to justify keeping it. I do like it down Mim could tell you, that town is a best-kept secret. I am busy trying to find myself, I guess--that sounds so adolescent and stupid. But it is a fun process to figure out how I want my life to be now that I am on my own with nobody to answer to--what do I want to eat, how do I want to fill my days, what is important to me and what can be allowed to slip away out of my let's see... I chant the Liturgy of the Hours a couple times a day, work on my novel (trying for at least two hours a day on that), try to do one quick drawing on most days, and try to play at least one or two quick songs on the harp. The dog takes up a lot of time, of course--and distracts me from getting into "the zone" and getting a lot of work done...but as I said, it is a process. I'm not a holy roller, but my religion has helped me a lot--I'm by myself a lot, but never feel alone.

    Some other things I've done: In the past month, I've been to two parties, been down to Manhattan for a friend's ordination to the diaconate at St. Patrick's Cathedral (his wife gave me a "family and friends" ticket, so I got to sit in front), and been to the Bob Dylan concert here in our town.
    • CommentTimeJun 27th 2017
    It all sounds great, in spite of the family stuff. As you know, I have the same hurt, and there is nothing I can do about it except get out of the way. I like the sound of all your creative activities and your involvement with friends and community. Not to sound pollyannish (sp?), but you do set a good example to your family. Small comfort I know, but it's true. I has forgotten that your husband lived in that house, too. That would make it doubly precious. Right now, it seems you've struck a good balance.
    • CommentAuthorWolf
    • CommentTimeJun 27th 2017
    Sounds good Elizabeth. The next few years show every prospect of continuing to grow and improve.
    • CommentAuthorcassie*
    • CommentTimeJun 27th 2017
    It was lovely to read of what gives you happiness now, Elizabeth.
    I just wanted to jump on for a minute and say that I'll post more in a week or so. I'm in the Heartland and still working hard on pulling myself together for his third anniversary in Heaven--Sept. 2. The days leading up to his death date are always evocative for me...a lot going on inwardly that I'll share later.

    So I'm "lurking" for the moment--very worried about Mim, lindylou, Ky caregiver--but sending lots of thoughts and prayers, that's for sure. Arms around. (((((( )))))).

    Mim, I'll touch base later today by phone or email.
    • CommentTimeAug 27th 2017
    Elizabeth, it's always good to hear from you. I was wondering how you were. And Bandit.
    Bandit is a lot of fun and continues to keep me busy--God forbid I try to sit down and get "in the zone", focused and busy with something. He just knows that I live only to take him for walks and chase around the house playing with dog toys.
    I'm just jumping on for a minute here to report that the third anniversary of Larry's death passed by in a busy blur--I was just winding up my weeks in the Heartland by going to the county fair Sept. 2 with DD, ex-son-in-law, and the three grands. That was a crazy day, and then the next morning, Sept. 3, I hopped in the SUV with hound, harp, and houseplant and drove 8 hours back up to NY. I found that I was thinking about him a lot without really being able to take many quiet moments for reflection.Before I left the Heartland I opened the wooden memory box and just fingered his rosary beads, his onyx ring, one of the prayer cards from the funeral...and just took in the fragrance from his tobacco pouch. I opened up the pouch and put it right up to my nose...evocative, to say the least. I still feel that he is always with me--he is a part of me now--and a part of everything. I see him in the wind, and in the sunlight...feel him in my heart, and also right behind me at my shoulder. It all sounds a little whack-a-doodle and New Age, but I am peaceful about it for the most part--not really sad--but sometimes I am overtaken by such poignant feelings of nostalgia and thinking of the past that it brings me to a dead halt for a few moments. As I pulled over onto the thruway exit and drove into my Hudson valley town I had such a strong feeling that I just wanted to drive back to the old house instead of my apartment--to walk in the door and into the family room and just find him smoking his pipe, watching the news, sipping his Manhattan...I just wanted to go Home! To "home" where it used to be, with him in it. That feeling was brief though, and Bandit and I arrived back to the apartment to have a nice time visiting with neighbors and their dogs and re-acquainting ourselves with our comfortable NY "pad". I've been to choir practice--nice to see everybody--and to a public forum having to do with parking issues in our town. So I'm not exactly moping around, but have had an unusual three or four days of feeling very anxious and a little panicky--feeling a lot of free-floating fear--not sure what is going on. You all know I'm not like that. But I think what it is is that I really have not taken the time to reflect and center myself again--to find my balance--after this three-year anniversary. Sept. 2 is an important day for me personally, and instead of using it the way I needed, I completely lost myself in the outing with the family. It was not really avoidable--for a number of reasons, that was the only day we could go to the Fair. But I am still pretty fragile at times, even after three years, and I really needed that day as a self-care day---and I paid for it later with the major heebie-jeebies. I'll try to consciously schedule Sept. 2 next year for my own "me" time--which still seems to be needed. As we may have mentioned a time or two, Al Z. Heimer takes a big toll on the caregiving spouse.

    Not really relevant to the forum, but our church has been rocked by some huge changes over the past months--satellite church was closed by the archdiocese, school was merged with the other Catholic elementary in our town, assistant parish administrator has embezzled a large sum of church money, and--worst of all--our dear, 80-year-old pastor has had to retire due to --you guessed it--Alzheimers! So the choir, which is a really good one and very active, feels that we have a big role to play in supporting the Mass and the parish as much as we can. The Music Ministry really is a "ministry" here, and I feel good that I have something to contribute to this parish that was alway so good to me. I met Larry in the church rectory--married him right up there on the altar--attended most Sundays for years. I was fortunate enough to have a wonderful last conversation with our parish priest--and a final hug-- just shortly before he went to his retirement home in the Bronx. We talked about Larry and the wedding day..Fr. Frank was a little fuzzy, but still had some memory of it--a nice feeling of closure and good-bye. So while all is not couleur de rose here in the parish right now, I feel that there is a (small) role for me to play in helping to make things better--a satisfying feeling of belonging and being needed.

    Hope this wasn't too much information--but I feel like I'm with friends when I come here. And speaking of friends--keep Mim and her family in your thoughts and prayers. There is a lot going on down there--but of course I'll let her speak for herself and share what she wants to.
    • CommentAuthormyrtle*
    • CommentTimeSep 7th 2017
    Elizabeth, It's clear that you've decided which location is "home" for you. I wonder if Bandit senses your feeling of comfort there.
    • CommentAuthorcassie*
    • CommentTimeSep 7th 2017
    Elizabeth, it was good to read your update. Yes, you really did need that day just for you so I hope that you will find your balance again soon.
    And I believe that your husband still surrounds you with his love just as you feel that he does. Keep singing and be happy.
    I am still praying to St Jude, for Mim.
    • CommentAuthorWolf
    • CommentTimeDec 8th 2017

    We all have a weakness
    But some of ours are easy to identify.
    Look me in the eye
    And ask for forgiveness;
    We'll make a pact to never speak that word again
    Yes you are my friend.
    We all have something that digs at us,
    At least we dig each other
    So when weakness turns my ego up
    I know you'll count on the me from yesterday
    If I turn into another
    Dig me up from under what is covering
    The better part of me
    Sing this song
    Remind me that we'll always have each other
    When everything else is gone.

    We all have a sickness
    That cleverly attaches and multiplies
    No matter how we try.
    We all have someone that digs at us,
    At least we dig each other
    So when sickness turns my ego up
    I know you'll act as a clever medicine.
    If I turn into another
    Dig me up from under what is covering
    The better part of me.
    Sing this song!
    Remind me that we'll always have each other
    When everything else is gone.
    Oh each other....
    When everything
    Else is gone.

    Incubus - Dig


    I will always carry the intense sorrow of losing my love. I'm glad to. It's a privilege. Having her is the greatest gift I ever received and losing her is the greatest gift I ever gave. I love once I believe and that was my grasp at that ring. If that sounds sad, it's not. I'm becoming something else now, and while I have sad memories, I don't feel sad. There are many forms of love and many forms of life that might reveal themselves once the spirit's wounds are healed. And such healing takes place I give you my word in both Dianne and in Alzheimer's.

    I feel as though I'm already inside the undiscovered country of what I am not yet but am embracing knowingly at long last. I feel I'm at the last castle to siege on a terrible and rip your lungs out painful journey. The last act is to tear the walls down of the very thinking that has sustained me and brought me to here. That I'm struggling in some way anymore. I'm not; and it's time for the last vestiges of victimhood, defense, and protection to be demolished. I'm free. And this is play time until the wheels come off.

    It's snowed, and so it's time to watch Grumpy Old Men which has that great scene after Chuck went over to Ann Margret's where they both suddenly get the brilliant idea of doing the same thing and they bathe themselves and put on cologne and get dressed to head on over. This is the song that's playing.

    I'm Too Sexy - Right Said Fred

    I respect drama. I get that it conveys directly. No interest. I rescue the princess. Then we ride off into the sunset together. If that's not happening, I rescue myself and I ride off into the sunset anyway. There's a lot of drama in life, but there are a lot of funny parts too; for my money it's easy to do drama but it's hard to do comedy - and it's hard to tell which portrays more 'truths' about life on this very, very, mixed up planet.

    You see, I don't think God made this endless universe with tons of suns and planets just for this one location here. I'm pretty sure He planned to use the whole thing. There are yahoos out there now unknowingly looking right at us, wondering if they're unique. Yes you are and not like that. Thank you for playing. I don't know if they're too sexy for their hats but I bet they got a thing going on that works the same way.

    It reminds me of that joke that I want to die peacefully in my sleep like my grandfather did - not screaming like his passengers.
    • CommentAuthorWolf
    • CommentTimeFeb 17th 2018 edited
    ttt for Thomp360
    • CommentAuthorNicky
    • CommentTimeMar 1st 2018
    • CommentAuthorMoon*
    • CommentTimeMar 13th 2018
    • CommentAuthorWolf
    • CommentTimeMar 14th 2018 edited
    In May of last year, after five years of hibernation from people, I suddenly invited my two single neighbours over for dinner. They came and we talked and that opened the door to more interaction with both of them that continues to this day.

    Having made one very close friend and a handful of good friends my entire life, I never expected to make new friends easily, but it really is true that no one knows what will happen.

    I have almost no interest in relationships with people I've known a long time. I had a lot of bitterness about how we were treated, but the truth is I just don't feel any interest. I believe I know those limited sets and I've noticed I have far more patience with new people than I do with people I know so well, I can play their parts for them.

    Last November, I had a long talk with one of the those people I've know most of my life and this time I invited her to come for a visit. She lost her husband almost five years ago and was showing real signs that she was beginning to stop acting like a widow. She agreed but had a heavy workload in December and then got her first grandchild where she lives in the downstairs apartment of her daughter's house.

    Last Wednesday she called and asked if that weekend would be alright on such short notice. I said that was fine and was surprised by how little the work I had to do to make her bed and room up and clean the house, seemed like work.

    She arrived and we went out to pick up chinese food and watched the Toronto NBA game where she's given to screaming and hollering. She brought a large bottle of red where I drank alchohol for the first time since September 2015. It was an exciting game and we had a great time talking all night.

    I had warned myself that I would be exhausted but we had a coffee in the morning and she was on her way to somewhere else and as I waved goodbye, I was amazed at how I had kept this window open for a long time while closing most of the others, and how I had now opened a door to a 'new' relationship that was probably going to go on for years again.

    Two hours after she left, I was fast asleep on the couch where I never nap except maybe a five to ten minute power nap once in a long while. I was out for a couple of hours and that night I dragged my behind into bed early because deep down I was exhausted trying to make sure I was doing what I could to make this work.

    I need more people in my life, you see, and despite writing them all off, I learned that deep relationships don't fall off of trees. There's something about this wingnut dwarf that I can't say about a single other person among the dozens I got to know. She's genuinely all in all the time and wears her feelings on her sleeve. Somehow I waited until I was on my feet enough to know I could let things slide again.

    Before Alzheimer's that was easy enough. During Alzheimer's and for some time after, it became unbearable how shallow and self serving friends and family were. Years later, it's easy enough again to understand whether something somebody else did or said says something about me or says something about them.

    Although pieces come back, nothing is like it was and nothing changes that the straw I pulled means I'm getting old alone. I would never have wanted this and, for me, growing into it doesn't include lying to myself. This sucks. But, there's another side to that which is that I really am here and this really is my life and making the best of it isn't enough by miles. I want to enjoy my life and feel neck deep in it. I'm not getting over anything so much anymore as I am faced with building up my life. Which is why I invited her in.

    Some of that doesn't involve people and yet is even more important IMO because I'm reading again and I'm interested in what I'm reading again. I'm running my house and the hated cleaning has become the zen of caring about me. Even though I had short notice, I didn't have to do much to make the house presentable because I keep it that way now. That was a journey somewhere else by itself I promise you.

    I have no idea what the years I have will bring. I'm going to find out though. My journey elsewhere so far is over a thousand days long. My experience is that it transitions in the same way an hour hand moves - unnoticed.

    I would love to say I feel good, but I have to console myself that everything has been getting easier and that the hardest parts of Alzheimer's are over surely. Yes they are and stop calling me Shirley.
    • CommentAuthorbhv*
    • CommentTimeMar 15th 2018
    "Shirley" ROFLOL. Wolf
    "I'm running my house and the hated cleaning has become the zen of caring about me. Even though I had short notice, I didn't have to do much to make the house presentable because I keep it that way now. That was a journey somewhere else by itself I promise you.". WOLF! How far you've come in what seems like a short time to me. I am so excited for you. ;)
    • CommentAuthormyrtle*
    • CommentTimeMar 15th 2018
    Good going, Wolf!
    • CommentAuthorWolf
    • CommentTimeMar 23rd 2018
    I've developed, like, superpowers in the kitchen. Like a whirling dervish, tasmanian devil, kind of thing, I swoop into the kitchen, eyeing the pile of chicken soup cuttings from two days ago and the pile of caesar salad cuttings from yesterday, the super large pot, the very large pot, the caesar salad bowl with leftovers caked with garlicy parmesan, cutting boards, knives, utensils, garlic press, lettuce spinner, and the kitchen sink...under there somewhere, and with ninja like reflexes, I turn that into a clean counter, a stack of clean pots, a bag of compost, a clean stove, and a clean sink.

    For five minutes. Yesterday I cleaned up to make the vat of soup and tonight I made my $5 breakfast on bagel dinner which are three toasted bagels with swiss cheese, crisp bacon, and eggs scrambled with green and white onions. One frying pan. Twenty minutes. Pure genius.

    I opened the freezer while I was making that to put in the three other bacon servings I get from a pound, wrapped in saran wrap and foil. Keeps for weeks. There are the nine frozen bagels waiting to be paired and there was the stack of frozen soups in tupperware I made the day before. It's like having magical powers because ALL of that stuff used to be hard and oppressive and now I can just do it.

    My neighbour, tomato lady, showed up at the door a few days ago with a tupperware full of her home made soup. She's the soup lady she said and I didn't correct her because she doesn't know I call her the tomato lady. She had eaten the soup I gave to my actual neighbour and was returning the favor. It was very hearty and good, but I couldn't tell what was flavoring it.

    I've realized that it's proven in spades that I'm the type of person that can fit into a really tiny space and still survive even when all heck is breaking loose. It hit me like a slap in the face (think three stooges) that all that pulp fiction I wrote about our constancy, Dianne and I, is bunk because the only constant thing about all those years was how constantly things were changing. I can live on bread and water in a dungeon for years. This is way easier than that was, although still near the top of the list of things people least want to go through. Anything short of falling on my own sword is brilliant. On I go.
    • CommentAuthorNicky
    • CommentTimeApr 8th 2018
    • CommentAuthormyrtle*
    • CommentTimeApr 12th 2018 edited
    [Discussion continued from the April 2018 thread]

    Elizabeth, I know what you mean about thinking seriously how to use the rest of our lives. I spent my twenties and thirties doing what I thought was just surviving. But in retrospect, I was doing what I was wired to do - improving my lot through work and education and having some fun as well. Then my husband came along, and even though I kept working hard, it was like a huge gift and I reveled in just being with him. Then, of course, came the Alzheimer's decade. Now he's gone and I'm at the end of my formal work life. Until recently, I thought that the years of caring for him had beaten me up so badly that the best I could do was to get back on my feet and try to get some pleasure out of what was left. I would dearly like to fritter - I never had the time or resources for that in the past, but I wonder if I'm accepting that goal a little too readily. Maybe I should think a bit more before heading down that path.
    Myrtle, I think after the Alzheimers hellaciousness that the widowed spouse has earned the right to fritter. And how else can you really figure out what to do with your life than to monkey around with different things for a while? Try on different hats before you find the one that fits. And if all you, or anyone, (I'm speaking globally here) wants to do is putter and fritter for their remaining years...well, so what? I don't think anybody who has gone through caregiving...or whatever they have gone through in their life...has to prove anything. Just live. Just be. Life is not a competition.
    Elizabeth, well said. For me, I don't want to just be, I do want to live and do the things I always wanted to do when I retired. I just may be doing those things alone or with friends. But you are oh so right about the fact that life is not a competition. Life is personalized, it's custom to you (globally)! I just have to figure out what that looks like for me.

    Myrtle - you definitely have company; I need to figure something out too.
    • CommentAuthorRona
    • CommentTimeApr 13th 2018
    Well said Elizabeth. After what we have been through nothing to prove no need for competition just live life and enjoy it as best we can.
    • CommentAuthoraaa
    • CommentTimeMay 4th 2018
    Have a question for those of you who have been at this for a few years, I think many of those on the list have spouses who developed AD earlier rather than later. I know my husband was having problems 10 years ago but I could not get his doctor to listen to me - and he was a certified geriatric doctor. DH is now 81 and while he is doing OK at home - I'm beginning to worry about myself. My mother and sister both had AD and lived approx 11 yrs after diagnosis. But it's way different with my husband, the feelings are nowhere close to the same. He has been told he has AD and at first was furious, refused anymore testing, but now I don't think he really understands the words. I can't believe he has just accepted it - not in his nature - but our Primary started him on Zoloft this week, and Aricept. I think I can tell a little difference with the zoloft - not sure about how long before the aricept kicks in or if I'll even know if it's working. I was not sure about it, since I've read so much about the side effects, but so far, with just one week under our belts, he at least seems happier. You all know how they can fool other people - but I can see the decline in our daily life. We are luckier than most since he is still aware of things and for the most part he lives in today. He likes to go feed the horses as long as I remind him --- as long as I remind him....about everything. Short term memory is non-existant, long term memory just wanders around through time.

    Now for the question, LOL. I have accepted the AD, I will take care of him at home as long as possible - and hopefully since he is older it will be possible. I've even accepted I have 100% of all the responsibilities for our life - our home - future - etc. BUT, I'm am beginning to worry about me. I wake up in the night wondering if I did such and such, some things stress me so much it feels like an anxiety attack. If I forget something, or don't remember what I started to do, I wonder.... is it my age, the stress or the beginning of something more. He wants me to be with him all the time, gets irritated if I go out of the room etc. I know many of you have been caregivers for many years -- do you ever feel that maybe your mind is going? I joke I'm not sure which one of us has dementia, but inside it's no joke. He talks about going and doing things but in reality I can't get him out of the house and the only place he will go is the doctors office and Walmart. If I let him he would sit in front of the TV 24hrs a day, watching the same programs over and over. He doesn't want me to go anyplace without him and he won't go anyplace. I won't even go into the hygiene problems as I've mentioned it before and you all know how that goes. Do any of you go through that anxiety of wondering how your own health and sanity will hold up or if it's already going? Would I even know it if it was???

    But the sun is shining, the grass is so green it looks like it's been painted and there are new calves in the field across the way. Some plants I thought had gotten frozen out are beginning to show a few green buds, even the lilac one of the horses ate down to about a foot off the ground has put out a few tiny leaves. God is good to us.
    • CommentAuthorWolf
    • CommentTimeMay 4th 2018
    It all makes perfect sense in my world. The entire post.

    Anxiety is almost certainly present, and part of the concern about thought patterns. The stress creates that over time. It makes sense too because there are plenty of real world things to be concerned about which continues to produce stress.

    One of the things you can do is accept the reality of stress and try to recognize it in it's different forms. Try to learn to live with it.

    One of the clearest fears (stress) isn't just whether we can do this and how it will unfold, but the knowledge that if something happens to the caregiver it's really a serious problem. Knowing all this, it's perfectly logical that you're watchful of signs that something is wrong with you.

    You might also try to acknowledge that seeing your bright husband become this from unseen forces that seemed to sneak in from nowhere, is a deeply shocking thing to witness. It's compounded many times by your connections and feeling for him, for both of you, and for you.

    Also, reading your post including the punctuation tells me you have a good grasp and ability to express your thoughts fluently. Not the slightest sign of anything in this one sample about some of your concerns.

    Finally, I've noticed that aging brings a new orchestra of things with it like questioning whether I locked the front door and forgetting why I came in this room and the inability to remember a certain name even though I can see the face and tell you about them. It's easy to get caught up in those subtle changes especially when we're under constant stress.

    As you said, "But the sun is shining, the grass is so green it looks like it's been painted and there are new calves in the field across the way. God is good to us." Consider the idea that under the circumstances, you're doing well and that worrying about worrying when this is on your shoulders is just one of the things in the tangled part of the garden now.
    • CommentAuthoraaa
    • CommentTimeMay 4th 2018
    Wolf, you have such a way with words, thank you. I've read all about your journey so know what you say comes from the heart as well as sensible thinking.

    Yes, I miss my a hundred different ways every day....I miss being a wife...I dread the time he will no longer be with me along with the stress/fear of our life now.

    Maybe most of all I feel like running to the top of the hill and howling with the coyotes out of frustration of what is, what was and downright scared about tomorrow. Each day when I get up I think a little part of me hopes that today will be different, this isn't really happening. I smile about your frustration in the least I won't have to face that.

    I smile, nod and chit chat with other people occasionally, we're fine, how are you. They couldn't imagine what a day is like nor do I think they want to - it might be contaigious.

    I cry and laugh along with some of the posts - this is the only place where I know there is someone out there who really knows how unbelievably different our lives are when AD moves in. Maybe tomorrow will be a good day to groom the horses, they are great listeners and don't think less of me for breaking down in tears.
    • CommentAuthorbhv*
    • CommentTimeMay 5th 2018
    Awww gee Oakridge. You are so interesting and sweet. I agree with Wolf, you.are very articulate.

    I sometimes have similar worries because lately I am forgetting things I never would have missed before. But I think it is the stress of being ever vigilant and fearful of something unsafe happening. That's always in the background.

    Then the claustrophobia when he follows me about or stands there watching me cook or do the yard work that he used to do. That makes every chore more difficult because, in addition to doing the chore, I.have to constantly be aware of not getting myself in a corner and not turning my back on him. For my safety The loneliness of just being here not wanting to do anything. Taking care of all the household chores, managing the business of us, personal care of two adults (me and him).

    Lately learning way more about the male anatomy than I was interested in. Can't figure out how there can be puddles in front of the toilet?? They they can aim with! What's the problem exactly??? No I don't really want to know.

    Wondering how they cope with all.the poop in a Nursing Home or Memory Care unit. Can you imagine working in a place with 80 beds or more?? I am overwhelmed with just one person besides myself.

    The other day my girlfriend said my voice was hoarse. Was I sick? Nope. I just don't talk any more. It had been days since I said anything. I go out back and howl with the coyotes any time they come by.

    I went to visit the neighbor's horses the other day. Brought some carrots. Thought hb might want to try that but he couldn't manage it. Honey puts her head on my shoulder. Like a hug. Is that sweet or what? Maybe I should volunteer to groom them. Sounds like a relaxing thing to do.
    • CommentAuthormyrtle*
    • CommentTimeMay 6th 2018
    Hi oakridge, Your feelings about being stricken with dementia yourself are probably due to the anxiety you're experiencing. Many of us have (and had) that anxiety and it can cause all sorts of unfounded concerns. What I see from your post is that you are entering the "prisoner-in-my-own-home" phase of caregiving. You probably can't escape this entirely, but you are at the point where you can start to take control of the situation so you don't get overwhelmed. Can you get someone to come into the house a couple of days a week for a few hours? Also, do some research on day care facilities, what the cost is, and how it might work for him.
    • CommentAuthorlindyloo*
    • CommentTimeMay 8th 2018
    Oakridge, I feel the same fear. My prayer is that dementia not happening to me. On the other hand I know old age is happening to all of us. And it is impacting me this way. I have a post-it on my front door asking if I have my phone with me. You'd think it would be as automatic as taking my keys, but it is not. Of course the keys are always in my handbag and no self respecting lady goes anywhere without her handbag. My phone, on the other hand could be anywhere, and 50 % of the time that post-it saves me. And 50 % of the time I walk right past the post-it. Lol. I do on occasion get up at night to check if the door is locked. And I now make lists for shopping. But really it is my calendar that saves my life. Get me where I need to be, and I don't double book myself.

    Stress, anxiety, grief, hyper-vigilence, and old-age, quite a whammy in any combination, don't you think. Enough to muddle anyone Your thoughts and mine are still coherent and we appear to be processing things well as can be expected. I personally think we are normal human old stressed people. Maybe we will need to depend on friends and family to determine when/if we appear to be falling off the deep end. May it not happen to any of us. Keep posting.
    • CommentAuthorWolf
    • CommentTimeMay 19th 2018
    It's raining. A soft, continuous rain under a flat, grey sky that looks like it's going to go on all day. I have my windows open and the cars going by on the main road down behind me all have that sound of wet roads.

    There aren't many because apart from being Saturday morning, it's the first 'summer' long weekend here in southern Ontario which means the cities have emptied and the highways north are clogged, while everybody who owns a cottage, trailer, boat, or tent is trying to get to cottage country to open their cottage, clean out their boat or trailer, or start the camping season.

    This May weekend in southern Ontario also marks gardening center mania where all the gardeners can put their plants in because this long weekend tends to mark the end of real frost overnight. This year it's about as early as it gets but the weather forecast two weeks out shows no sign of coming anywhere near zero degrees at night and it's very rare to have frost by the time June rolls around.

    This long weekend also marks when the leaves have largely come out. Two weeks ago only southern Niagara and the northern shores of lake Erie had leaves starting to come out. Now all the trees and hedges are nearly full while the late bloomers like my Honey Locust out the back are just starting.

    Southern Ontario isn't clearly defined. There are two distinctly different types of land though. The Laurentian Shield breaks out above Barrie and slightly beyond Peterborough and there isn't any deep soil there. In fact, there is often more rock than there is dirt and trees. What there is instead is thousands of lakes literally everywhere, where the roads have to snake around them and bridges are everywhere. And on almost all of those thousands of lakes are the cottages and their endless docks where everybody wants the local marina to put their boat in the water at the same time - this weekend.

    If I turn on the AM station 680 now it will give me regular reports of how tied up all the northern highways are. I've spent many hours on them surrounded by cars packed to the gills with the stuff they're taking up for the summer - and endless trailers behind with the cottage boat. That will go on through Sunday and be replaced by the reports of how tied up all the southern routes from cottage country are. On Monday there will be very few trailers returning and almost no boats. They'll all be tied up on the hundreds of thousands of docks lining the thousands of lakes mostly covered under blue tarps.

    We never bought a cottage. We had sailboats. We never sailed much either. We were part of the small army that kept boats at the marinas lining Midland and Penetanguishene or west of Hwy 400 north of Barrie that targeted the 30,000 islands. That's a group of islands that run up the east side of Georgian Bay from the bottom right to the top which is several hundred miles. You can't get near them with a car. You must have a boat. Not one single road goes onto the 30,000 islands with the single exception of Parry Island up near Parry Sound.

    Instead there is a sea of islands so vast, that to enter them without charts is foolhardy because you will get lost and even with charts you have to pay serious attention. All of that vast area of islands (larger than some states) is littered with rocks and only the ones in the main channel miles from shore are marked. It's a vast area starkly beautiful and completely free of of roads, houses, people, cars, cottages, and all the things that brings. Just endless rocks and trees that look no different from hundreds of years ago because they aren't.

    The water of Georgian Bay is so clear that up the east side of the Tobermory Penninsula it is the same turquoise, gin colour that the half dozen carribean islands I visited were.
    • CommentAuthorWolf
    • CommentTimeMay 19th 2018

    I get the cottage thing too. We rented dozens of them as one of the things we did with our vacation time. Until you've woken up in that fresh air knowing you're at a cottage where the idea is to relax, and go down to the shore with your towel fresh from bed, and dive in to that clear, cool water from the dock - well, that was always one of the joys in life for both of us.

    She would always make tea. I grew up drinking tea in the morning with her. When she went into the home, I switched to coffee. I still have her last box of 144 tea bags. I think they're seven years old now. I use her teapot to drip my coffee into. The idea of nostalgia about her left quite some time ago and conflict inside about it all was dealt with before that. I am the judge of those things and doing that was very clearly part of getting back on my feet.

    It has been part of my journey to learn that peace inside means judging as much as it means learning to live with the sad parts. I judged no one was guilty as an example and I have long believed that now. It is taking longer to believe as fully in the vast fortunes I have experienced so far and to enjoy the riches on offer all around me. People are freakishly weird and they always have been. I know that by lifelong observation of both them and myself.

    I've always said that acceptance is not enough. I want to enjoy life and enjoy my memories, not as a sunshine pollyanna, but in realism, in actuality, in the same way I eat my daily bread and sleep in my comfortable bed. What a pleasure it is to see that I'm serious about that.

    You have to judge your seriousness about enjoying yourself because if you're not enjoying yourself, you're not serious enough about it. How funny is that?
    • CommentAuthorbhv*
    • CommentTimeMay 19th 2018
    That is funny, Wolf.
    Have you seen any of the Tom Selleck movies of the stories set in Paradise Cove? He plays the Chief of Police there. I can't think of the title right now. There is an opening scene where he is coming home at the end of the day. His house is located on an isthmus. The dog that adopted him is following him to the house. I keep imagining that is where you live. Your musings sometimes remind me of those stories.
    • CommentAuthorMitsou*
    • CommentTimeMay 19th 2018
    I just joined this board (on new member) and read your post here. It is giving me hope that someday I might enjoy myself again. I have not talked to anyone seriously in weeks, or been outside either as I have to watch my husband. The only time I went outside this week was to take the garbage out and while I did that he turned the gas on the stove. Luckily I smelled it before we exploded the house! Don’t know a soul in this town, but the scenery of the street looks good from the window when it is sunny.
    • CommentAuthorAug44
    • CommentTimeMay 20th 2018
    Hello Mitsou,
    It is heartbreakingly difficult. Is a day care possible or an aide to come a few hours weekly? It is hard to slow down and think about your own well-being but it's so important to make sure your "oxygen mask" is fitted properly and working. Please take care of yourself.
    Perhaps you could take the knobs off the oven. Take care!
    Welcome, Mitsou. I'm sure others will be along with encouragement and suggestions--but a couple of thoughts off the top of my head: Have you looked into a day program, or into paying someone to come in for a few hours so you can at least go shopping or go for a walk...whatever. If he is turning on the stove, you need to take the knobs away or disable it in some way, as Aug44 said above. If you let us know in a vague sort of way where you live (we have both U.S.A. and Canada on here--and I think Australia), and whether or not your husband is a veteran, we can probably zero in on some more concrete suggestions. Everybody here "gets it" and has either been through it and is widowed, or is going through it now--some with their spouses placed, and some, like you, keeping them home at least for now.
    • CommentAuthorMitsou*
    • CommentTimeMay 20th 2018
    Thanks for your answers Aug44 and Elizabeth 9/2/14. I introduced myself a bit on the New Member Board and will answer you there as this Journeys board is off topic. I’ll explain more fully about us over there.
    • CommentAuthorWolf
    • CommentTimeMay 29th 2018 edited
    Way over on the left was me pulling my hair out while jumping out the window howling like a banshee. Way over on the right, I'm having perfect coffee in my studio with the windows wide open listening to the birds and the sounds of the city waking up to this sunny, summer day.

    It's not summer. It's the 148th day of this year already but these late May days are indistinguishable from July. Unless you go swimming in cottage country. Then you find out rudely that Ontario lakes take more time to warm up from being an ice cube.

    I have no plans to go up there. I do have plans to have plans. That ball is in my court now that there is no court and I own all the tennis balls and the equipment, never mind the building. All I have to do is say I have no plans to have plans, and my chores are finished.

    I wondered recently just how honking old I would have to get to resemble the comatose dungheap I became thanks to my tour of duty, and saved a lot of time by calling it incalculable. I refer to it, like the Queen did, as anus horribilous. I might not have spelled that right but I've given myself a mulligan in looking it up.

    I have a lot of mulligans available. I don't really care. I turned FUBAR into gemütlichkeit which is a lot like pulling a rabbit out of my hat, even though I paid a handsome price for that which was three lost years. Well, I say lost, but I know where they went.

    That was my plan coming out here to this very different city. Once we moved in I had achieved my plan. In the few serviceable years she had, we went everywhere in the area. I can make plans in a jiffy; I just find overplanning boring. So I still have the same plan which is that even though I've lived in this house longer than anywhere else in my life, I've been too busy to move in. Literally. AD began showing itself just before we moved and there are still some boxes down in the basement unpacked. I have a plan for those.

    I hear comments from friends that they think I'm stuck. I can easily see how some might think that. After all, I haven't hardly moved and certainly haven't done anything since my otherwise perfectly healthy squeeze decided she'd had enough. I thought I was recovering and was hoping to become more like my old self again; but, as usual, I was quite wrong. The stuff I spent my life doing doesn't apply. I'm not in a partnership, I'm not working at a job, I don't have weekends, and I don't know anyone I would call a close friend. I have one good friend and one close sister left out of literally dozens of people I believed were close.

    None of those facts matter now. They're what fills the landscapes of their times. I'm the curmudgeon who has hardly come out of his house for nine years and counting. In that time I've become the most honest and genuine version of me that I never once imagined and don't imagine now. That was the hardest, most work, and most dangerous time of my life with 2011 deserving mention. That's followed by 1967 when I should have studied, but spent the entire time wrought up over whether I was ever going to have sex with anyone. I give myself a mulligan there because I can see things however I want, just as I notice everybody else seems to.

    I have both failed miserably and succeeded brilliantly. Neither swept me away. I've lost friends who failed less than I did and became kaput and I know people who succeeded less than I did and have become insufferable. Those things don't matter unless you're the person they happen to. What matters is how I see them, and how I see them is a bunch of things I somehow escaped from becoming ensnared in. Opinions vary about that. It's the nature of opinion that it varies among the users.

    It doesn't mean squat what we have. It's all in what we see. That is humanity's greatest strength and it's greatest weakness. Facts are optional and almost never fully known anyway. It is the nature of humanity to be ruled by what we see and not by the 'facts'. That is a powerful aspect of reality as a human which drives everything else. That's how you identify every freedom fighter from every terrorist. We are one and they are the other.

    The answer, by the way, was Dianne. Dianne was willing to have sex with me.
    • CommentAuthoraaa
    • CommentTimeJun 7th 2018
    Had to be online this morning and saw this site was still open so started reading.......finally realized I was reading posts from may/June of 2015, lol not a lot of difference. I think this disease takes us all in a loop from the beginning, the highs, the lows, till it comes to the end of the circle. Not all at the same place at the same time but traveling the same road. Then, we begin a new journey of "what now?"

    I don't remember who posted it but someone said friends had slipped away, was not ready for the sympathy - wasn't in denial, just wanted to sit awhile, alone with thoughts and memories.

    We needed to get some dog food and horse grain this morning, it's just a couple of miles away on the back roads so hubby decided he could go alone. He got dressed and came out freshly shaved, good clothes, hair combed...and looked like my husband again. He wasn't gone long but I just sat here alone in the quiet house, enjoying the morning, the quiet, a good reminder of the man I married - doing nothing. It felt so good to just sit for a few minutes, alone, with no immediate obligations. I think if he goes first, that's what I'll do, at least for awhile just sit and think and remember the good times, without having any obligations to anyone. Not family, not friends, just enjoy each day and let acceptance come in its own way, at its own time.
    Oakridge, I think if he goes first, that's exactly what you should do. Sit quietly, enjoy the morning and don't feel obligated to anyone. My DH has been gone for nearly 4 years and I am living proof that there IS life after Alzheimers. I am 81 years old but I go where I want to when I want to and don't care what the house looks like. I would move to a Continuing Care Community but I do have my eldest daughter here and feel obligated to give her housing. She has medical problems and mental problems so it 's what I do but I don't have to be here all the time. .
    If you all can stand one more posting about my blankety-blank pneumonia...or whatever it is...because all the testing has been negative..except that it is still there. I feel absolutely fine and have no symptoms of anything, but the CT scan May 31 showed that I still have "multifocal patchy airspace disease in both sides." So lungs are better, but still not clear. Talk about a medical mystery. So now I'm being hooked up to a fourth doctor--the thoracic surgeon--who will meet with me on June 22 to decide whether I should get a lung biopsy or wait and see if this clears up on its own. The pulmonologist said that if it was anything dire I would be getting worse, not better. And that makes sense. But who knows?